I know there was the general info message sent out by the NHS but I am talking about the letter or text regarding people at high risk?
Has anybody had a txt or message from the NHS yet? - MPN Voice
Has anybody had a txt or message from the NHS yet?
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jillydabrat
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75: ET: Jak2:Hydroxy: Aspirin - Nothing apart from the general 'Stay at Home' text which has been sent to everyone. Having a telephone consultation with my haematologist on Monday.
I'm same as you, hope your consultation goes well, if it is not too personal to you could you place an abreviation on here too. Seems so much confused info doesn't there.
Jill,
Yes I have had the High Risk Text, it was planned that I would play some role in my profession of Nursing..
Scuppered totally by my ET, MF, PV, AXSL1 Mutation Etc.
Totally gutted I cannot help, even for General Triage of Routine Stuff just 20 hours per week...
Guess it’s 12 weeks indoors and my garden.
Like you, I Crochet and Knit and decided to do Large Throws for my two Daughters and Granddaughter.
Always nice in Crochet..
Stay Safe and Well
Maria 😊
Yes jill, I had the general one everyone recieved yesterday from Gov_Uk, saying you must stay at home barring exemptions but I received 3 texts yesterday direct from NHS. First one about medication,second one what to do if anyone lived with me and third one telling me if I lived alone to tell family and friends if i'm self isolating and talk to someone at least once a day over the phone. Also received one at 6.30 p.m this evening asking me to check I have enough fresh,frozen and tinned food especially vegetables,dry food and soap for handwashing and telling me to inform family or friends to leave it on the doorstep for me. Also telling me to be prepared in case I need to go into hospital and pack a single bag with key health information and essentials for an overnight stay. I presume this is because I have other health conditions besides Etjak2. Atb, tina.🤗
Just received the letter from the NHS saying i've been identified as someone at risk of severe illness if I catch COVID-19 because I have an underlying disease or health condition that means if I catch the virus i'm more at risk of being admitted to hospital than others and telling me to self-isolate for 12 weeks except for my medical care. It then go's on about basic care, symptoms if you show any,etc. It also provides contact numbers and e-mail addresses for help.Atb,tina.🤗
Hello, I emailed my medical team at guys today and asked should I be expecting a letter, I got a bit of a politicians answer to be honest, just said I am In vulnerable group but not extremely vulnerable group and attached the govt guidelines. Didn’t answer my question. I’ve now messaged my GP practice to ask them. I just want to know one way or the other and cannot understand why I can’t get a definitive answer.x
Hi,
Am new to this site, but hope I am able to make a very useful contribution
Spoke to my GP on the phone today after my son and wife, both hospital doctors, said that my condition and medication make me high risk . I am on Hydoxycarbamide for ET.
He agreed that I was definitely high risk as 1) ET is a blood cancer 2)I am on active chemotherapy 3) I have a rare disease. All three are listed as high risk. The Government list was produced rapidly, with various contributors (not GPs). GPs are going to contribute in the coming days apparently.
Anyway, the GOOD NEWS is that my GP had literally just discovered that you can add yourself to the list! Have your NHS number ready - this is the link:-
gov.uk/coronavirus-extremel...
Sainsbury's are going to use this list soon to update their database of high risk/vulnerable customers who get priority for home delivery of shopping.
Hope this helps
Denise
Thank you Denise,
That is very helpful, I have registered on the site. It’s worth it if only to get home delivery slots.
I think you should re-post this as a new post and more of us would see it.
Many thanks
Judy
Thanks for the suggestion Judy - have done as suggested and put this on as a new post.
Need to get used to the best way to use this site. Having 2 doctors in the family is very useful and I will pass on any helpful info they (or my own GP on this occasion) give me.
Best wishes
Denise
Thank you so much Denise, I was so stressing that I would have to start chasing all this up next week & also need info for my work, your a star 😁 Marie xx
Hi I managed to register on this site GOV.uk think 3 days ago. Haven't heard anything and bit desperate for shopping so had to mingle with the other vulnerable and elderly this morning at 8.00. Got all I needed but felt extremely exposed as people just dont stay away. Heard about a person trying to buy ventilators for NHS. He has heard where he can get them, had to go back to department purchasing and they didn't reply for days by which time the initial ones had gone!! Think everyone is being so stretched at the moment. Take care all.
Thanks for this very useful information. I’ll register for this in awhile.
I’ve changed my shopping habits. I’m limiting them now to my Sainsbury’s local, I go in the car at opening time 6.30am, not many there then. They are only allowing two in at a time and have marked out distance tape at the tills. It’s more expensive and stocks are limited, but I can get milk, bread, eggs, cheese, etc. I had already stocked up well before this too. Also, been to the farm shop yesterday (one person in) for fruit/veg.
It’s not ideal, but I feel so much safer. I also wear surgical gloves, and breathe a huge sigh of relief when I’m done!
Hello Jill, yes I got a text to say I am very high risk + to stay put for 12 weeks, though I think that is less to do with the ET and more to do with my lymphoma (though I’m stable with both) - much reading + pootling about + many cups of tea. Take care. Anne-Marie x
Hi, I get more confused by the day! I hadn't received a text so I emailed my consultant yesterday. He said that ET is a blood cancer and that I therefore fall into the high risk category.
It's because they know very little about the coronavirus and are erring on the side of caution.
It's worth having a look at the advice on the Bloodwise website too.
Hope this helps
Ian
I received my high risk txt Monday night. I am ET/PMF MPL mutation currently taking hydroxy, clopidogrel, high risks of strokes.
I have now got my whole family at home partner only Togo to work only if neede (classed as critical worker due to where he works) eldest daughter working from home. Our other two children are off of school. Lots of changes but everyone pulling together to protect themselves and to protect me.
Stay safe nettie xxx
Hi Jak2ET Hydrea and blood thinner - I haven't had anything other than general letter. I am due to have blood test so can see how red platelets are going as was high raise last consultation so phoned practice. I am still on for this at the moment so thats ok. I am most concerned about going out shopping. I got through on the Sainsbury's phone no and got message which said register on Gov.Uk and did this, asks if we are vulnerable and want NHS Trust no. Hopefully they agree vulnerable cos our immune system is weakened if on Hydrea. They then contact Sainsburys etc and say we are to go on to vulnerable list. Will let you know the outcome.
I've just had the general one to stay in. My next door neighbour has several health problems and has had 5 different texts so far. When I spoke to my specialist nurse a couple of weeks ago she said I wasn't high high risk as Anagrelide doesn't lower your immune system as much as hydroxy but to still stay in if possible. Which I am doing.
I've had to go out to the doctors as I've been having my blood pressure monitored - which has remained high (deep shock) so going on medication.
I've been catching up on a few jobs around the house, still avoiding ironing though! Luckily my husband can go out for groceries, just using the local shop, he's careful about washing his hands etc when he's been out. We're both retired so no work problems for us, just sad we cannot see grandchildren etc.
I've received the different 5 texts and the official NHS letter this morning to self-isolate for 12 weeks having been identified of severe risk if I catch COVID-19. I do have other health conditions. Atb, tina.🤗
Good luck Tina.
Hope you’ve got all your necessities and friends and family to call on.
Stay well
Mary xx
I've got everthing I need thank you mary, family on stand by and friends. Luckily I am always well stocked, unfortunatley it looks like i've been in close contact with a person suspected of having Covid 19 but because they are not testing around here it is not 100% certain. I was not self- isolating at the time because of the lack of information and risk factor but the most important reason I was not isolating is certain people need help close to me including a friend whose family are abroad in pakistan and are stuck there and my daughter who is looking after the the two most precious things in my life and the reason I smile everday, my Grandchildren, the smaller one having just had a major operation around 6 weeks ago. I am lucky in that I speak to both of them everyday on the phone everyday even before COVID 19. My worry will now be for my family but we will get through this mary and please you and your husband take care and stay safe of yourselves and of course your aged mother. God bless you.xx🤗
That’s a worry Tina. I imagine the not knowing is as bad as receiving a positive confirmation.
Hopefully, everything will be ok, but be wary of any unusual symptoms. I know they can’t test everyone at the moment, but an allowance should be made for ‘high risk’ patients.
Look after yourself, and thanks for your kind thoughts.
Fingers crossed for you.
Mary xx🥰
Go to the GOV.UK website and register yourself. There are so many conflicting messages. I would phone your consultant and tell him/her that a number of people on this site with the same condition are being placed on the Vulnerable Person list, why have you not received your letter or text. I phoned James Cook hospital yesterday and they said they were going to contact people yesterday and today, they were running behind because of the amount of people they are having to contact.
I had a call from the hospital this morning to say that my appointment next month would be a telephone consultation, after I had had my bloods taken, I asked if I could have that done at my doctors but she said they preferred it "fresh" and to have it taken at the hospital as usual, fortunately my appointment is early morning so hopefully it shouldn't be too busy. I asked about isolation, told them I was staying in, she said to carry on doing that and not take any risks - which I'm not doing! Take care and stay safe. x
See what I mean about mixed messages. The same day I received my copy of the letter that my consultant sent to my GP telling my doctor that they require my blood to be taken at the GP's, I had a text from the doctors saying they had cancelled my appointment to have my blood taken on 26th May! After a 30 minute wait on hold while the receptionist had to run after the nurse who wouldn't answer her phone, they reinstated my appointment. I asked her why such an important blood test had been cancelled but she didn't know. It would be so much better if their was some consistency with everything but there is just a confusing mess at the moment
I thought I would have a letter or text having PV and being on Hydroxy?
You may still get one Jill. I’m really hoping I don’t get one. ☝️
You shouldn’t wish that my lovely. Being on the Vulnerable Person registrar will ensure you have food or medicines delivered when nobody can do it for you. My beautiful hubby was nearly in tears yesterday because he has been going to the shops when we run out of milk. He said he would never forgive himself if he passed it on to me and his life wouldn’t be worth living without me in it. I squeezed that man so hard as I cried into his shoulder.
It’s because of the situation with my Mum, I’m her carer, she can’t manage without me. Still being sensible though. X
Nothing yet. Tbh I’m hoping not to get one and that in the category of high risk but not extremely so - at least then I can walk the dog and will manage being on own for 12 weeks. Take care all. As Karen Carpenter once sang ‘it’s only just begun’. Jx
Phoned the cancer helpline found on the bloodline website. I explained that I have PV and on hydroxy and the lovely Sophie, who I spoke to said I was a person of high risk. If I don't get a letter by the 29th then I am to contact my hematology dept. My GP practice said they have nothing to do with letters not at all helpfull. Everyone should register with Gov.UK
I’m not concerned if I get a letter or not. I’m doing everything I can to keep myself safe. I don’t need any shopping, I went for a walk on Tuesday but there were too many people about for me so I didn’t go yesterday. My daughter picked up my Hydroxy from the hospital yesterday, so I just need to go to my local pharmacy on Monday for a repeat script.
I spoke to my heam on Tuesday and she said to observe the normal government guidelines.
Stay safe everyone.
Judy xx
Hi judy I think they are only sending them to people with other certain health conditions because as we know when it comes to Mpn's, even though they are classed as cancer of the blood they are classed as "lower leauge cancers," and you are absolutely right wishing not to get one as it makes it more surreal. I have had a phone call, been bombarded with texts and today the letter from the NHS, plus to top it off a letter from our local council which I presume every resident around here as had. You take care and if possible go for your walk when their is less of a possibility when other people are out and about. You take care and stay safe.tina.x🤗
I think you are being so sensible Judy. The letter isn't important but keeping yourself as safe as possible is. Take care, kindest regards and E hugs Aime xx😻😻
Hi Judy, you may not need shopping now but you have to self isolate for 12 weeks, surely you don’t have food to last that long. You may never have to use the delivery system available to those who are categorised as high risk, but it will be there should you ever need it.
No. No more than the general Gov. alert. Weird???
I received a letter this morning - saying that my next appointment on the 20th April will be a telephone consultation.
It said to follow normal national guidlines and that Myeloproferative Disorder is not cancer and Hydroxycarbamide is a very low dose chemotherapy and does not suppress the immune system. Then it goes on to say that if I do suspect I have Covid-19 to stop taking Hydroxycarbamide immediately.
Trying to get an appointment at my GPs for my blood test is turning out to be the hassle - I have to be triaged by a nurse tomorrow, who will then book my appointment... considering that my blood test doesn't need to be done until around the 14th April it seems a bit daft. I know they're being extra cautious but wouldn't it have been better to book my appointment, then ring me the day before to triage?!?
I'm just going to remain doing what I've been doing for a few weeks now... staying safe and well. Isolating along with everyone else and then when things return to 'normal' practice social distancing. 
I find that letter so disturbing. The MPN site say not to stop taking any medication. You didn't say who the letter was from but I would contact your consultant.
Unfortunately it was from my consultant. 
then your consultant needs to look MPNs on the World Health Organization website. That is shocking that he or she still has the draconian idea about this illness.
Hi Kari,
I have monthly blood tests as I take methotrexate as well as Hydroxy. I had a blood test the Monday before last and she booked my next one for 14th April. No problem. I go to Exwick health centre.
Also, I spoke to a nurse from Yarty Ward last week when I had a query, she said if I did contract the virus and my temperature reached 38 degrees to ring Yarty not 111 and they would advise me what to do and whether I need to go in. She also said to be careful taking Paracetamol as that can lower your temperature and mask the real symptoms.
I’ve not had a letter yet ?? Strange as same hospital?
Stay safe, Judy xx
It is Judy - To tell you the truth I think the receptionist (at St Thomas HC) didn't want to be bothered looking for an appointment. I explained to her a number of times that the blood test was for a scheduled heamatology appointment and that I had the 'blood-bag' and that I've had my blood taken there many times for the same reason. She then said I would need triage before booking a blood test appointment!
And you stay safe too. Kari.xx
You tell whoever that message was from that MPNs were classed as cancer by the world health organization in 2011 so they are wrong. When I contacted Bloodline this morning I was told that having PV and Hydroxycarbamide put me in the high risk group. Mixed messages everywhere. Maz can you help?
Forgot to add that when I had to attend A and E last year I was told that if I ever had a high temperature I was to report straight to A and E because of my Hydroxycarbamide. Why do they make you stop it when you go to hospital for surgery!!!!! I am so angry at all the mixed messages. I feel I don't know if I am coming or going.
I have only had the general text, no special letter/instructions. I have ET PCV am on blood thinner because of an earlier PE, also have fluid in my heart and a defective heart chamber, not to mention Osteo arthritis. I am doing the 12 week isolation anyway. I am sure we must be more at risk with our MPNs. Perhaps our letters will arrive in a few days time???? Take care everyone. Love to you all.
I phoned hematology today and was told letters are being done today and tomorrow as there are so many they have had to target. This is James Cook Hematology. Let's see what happens now. I won't go out of my garden because the "done thing" right now is gangs of youths spitting at you or coming up and coughing in your face. At a local Chemist today people were queuing up to pick up their prescriptions when a young man came in, pushed his way to the front and when challenged by , elderly lady started to spit all over the floor. He told them that if they didn't let him have his Methadone right now he would spit all everybody. I think the devil's are coming out of the walls now and I hope the Saints conquer.
Had I seen that I wouldn’t of been able to control myself and he would of been on the floor.x
I think the world is going mad Steve. I am scared to go out lately.
Unfortunately this is getting more widespread with gangs and the lawless, people today do not have the community spirit from a generation ago and it is both sad and sickening to see what go's on in today's world. Whether it be drugs or scams carried out from people claiming to help the vulnerable or elderly in this testing time. Also people ignoring government advice and thinking they're on holiday and out and about sunbathing and having barbeques for God's sake. The list is endless and their stupidity effects other peoples lives. They should hope if they catch COVID19 they don't pass it to anyone of their loved ones, but to be honest some in these groups wouldn't care less I suppose. Atb,tina.🤗
Oh dear Jilly, that is so very scary.....you don’t need this with everything else going on.
Re letters, my ex husband who has cml only got his this morning. So they must be just overwhelmed
Please try not to get too anxious ( easier said than done I now ) just stay in with your hubby and lovely dogs. Try to blank nasties out.
Take care
Love Sandy xx
Hi Sandy, hope you are okay and not climbing the walls yet. Today I heard the most evil, contemptuous thing I have ever heard.
Whilst paramedics were in A & E last night handing over patients. Someone or some people broke in to the ambulances and stole all the PPE they had on board. I am praying that someone knows who this scum is, or that they were caught on security.
For evil such as this they should be locked up for at least 10 years, not just given a slap on the wrist.
I said to my husband that all those drug addicts who shop lift to get the money for their drugs, will now be doing house burglaries because all the shops are closed. I am terrified of what is going to happen in this world now.
Hi Jilly I don’t really know what to say, it’s very very sad to think that people are that desperate to stoop so low. There has always been opportunistic stealing, and always be thus. This is another crime altogether.
Again please think of all the wonderfully kind acts and selflessness all around, I have had total strangers ( found on local media site) that have stood in long queue outside the pharmacy , just to pick up my medications. Those incredible 600.000 that have volunteered to help the NHS. The public who stood outside to clap their appreciation to all the wonderful people on the front line of this battle. Very moving sound.
All we can do is stay vigilant , make sure our home is secure . And take care of one another.
Please try not to worry too much, not good for you. I worry too we all do. The good outweigh the bad.
I like you that the perpetrators are caught soon and justice done.
Love Sandyxx
That’s awful behaviour! At our local gps, a couple of men pushed in, avoiding the triage and coughed all over a nurse! This is going to sound awful but I almost hope they get the virus and are then embarrassed by the care they receive regardless.
My gp actually rang with test results which were normal and he really didn’t have to do that! However he has always been very kind and going beyond what he needs to do. Poor man has to put up with all my ailments!
All keep safe, keep well. Kindest regards, love and E hugs (not rationed).xx Aime 😻😻😻😻
Hi Aime. Good to hear normal blood work .One less thing to worry about! Nice to hear also that you like your Heamo I like mine too, just didn’t like my old one, that’s why I moved. We are lucky.
Keep on your wonderful walk, looks so peaceful +the wild life... so good for the soul....
Stay safe. Love Sandy xx
Hi, I haven't received a letter or tx apart from the general one everyone is receiving. I have ET I am on Hydroxycarbamide and clopidogrel, when I spoke to oncology helpline last week they said to quantine for 12 weeks due to being on Hydroxycarbamide.
Take care everyone
Linda
I have only had general gov.uk txt nothing else. Saw my Haematologist last week & said I was only at slight to moderate risk l. I have ET on aspirin & HU
Hi Jill, I have received no communications whatever but Although I have ET JAK 2 + I'm not taking Hydroxy at moment. Had a telephone consultation with my Haematologist at JC last Thursday and I've to continue with Aspirin and see her in 6 months unless I have bad symptoms and if I want an appointment in, say, 3 months to make one. No blood test, so don't know what my Platelets are doing. Keeping an eye on myself!! My son, who has Asthma tried to get an answer from his GP today regarding the NHS letter and after a lot of evasion, they've said he is on the list and should receive the letter by 29th. It's all very confusing!! Take care! Fran xx
In Germany no one as far as l am aware has received anything like a letter or a text. It seems to be causing many of you more stress then anything
I am ET only aspirin my haematologist advised during recent check up that l am not considered a high risk. Key seems to be secondary factors ie hypertension age heart disease diabetes.
I honestly think it is better to try and forget about the letter and as Sandy says keep your house secure, yourself isolated but as busy as possible. I’m doing more with the garden then I’ve ever done just to get fresh air and to be doing something different. I find doing practical things is helping my mental health - I’m also baking, cooking, doing adult colouring, reading, etc.
I’m also doing voluntary work with youngsters, which started early on this year and of course is now via iPad. I’m helping making up word searches, competitions, etc and these are emailed to one person who then collates and distributes.
I feel so much better mentally doing this despite struggling with hip and back pain because I can’t go to my hydrotherapy.
Take care, try to stop worrying so much, as Sandys right it doesn’t help and it can’t be good for us. The end of all this will come and we will look back on it from a different perspective and appreciate even more the things we do have, which you can’t buy ,like our families, friends, health, nature and freedom.
Thinking of you and sending E hugs which won’t run out! Aime xx😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻😻
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